title: Paper 6: EUROCAT member registries: organization and activities.
abstract: BACKGROUND
  EUROCAT is a network of population-based congenital anomaly registries providing standardized epidemiologic information on congenital anomalies in Europe. There are three types of EUROCAT membership: full, associate, or affiliate. Full member registries send individual records of all congenital anomalies covered by their region. Associate members transmit aggregate case counts for each EUROCAT anomaly subgroup by year and by type of birth. This article describes the organization and activities of each of the current 29 full member and 6 associate member registries of EUROCAT.
  
  
  METHODS
  Each registry description provides information on the history and funding of the registry, population coverage including any changes in coverage over time, sources for ascertaining cases of congenital anomalies, and upper age limit for registering cases of congenital anomalies. It also details the legal requirements relating to termination of pregnancy for fetal anomalies, the definition of stillbirths and fetal deaths, and the prenatal screening policy within the registry. Information on availability of exposure information and denominators is provided. The registry description describes how each registry conforms to the laws and guidelines regarding ethics, consent, and confidentiality issues within their own jurisdiction. Finally, information on electronic and web-based data capture, recent registry activities, and publications relating to congenital anomalies, along with the contact details of the registry leader, are provided.
  
  
  CONCLUSIONS
  The registry description gives a detailed account of the organizational and operational aspects of each registry and is an invaluable resource that aids interpretation and evaluation of registry prevalence data.
authors.affiliation: University of Ulster, Newtownabbey, Co Antrim, Northern Ireland, United Kingdom. r.greenlees@ulster.ac.uk
authors.forename: Ruth
authors.initials: R
authors.lastname: Greenlees
authors.forename: Amanda
authors.initials: A
authors.lastname: Neville
authors.forename: Marie-Claude
authors.initials: MC
authors.lastname: Addor
authors.forename: Emmanuelle
authors.initials: E
authors.lastname: Amar
authors.forename: Larraitz
authors.initials: L
authors.lastname: Arriola
authors.forename: Marian
authors.initials: M
authors.lastname: Bakker
authors.forename: Ingeborg
authors.initials: I
authors.lastname: Barisic
authors.forename: Patricia A
authors.initials: PA
authors.lastname: Boyd
authors.forename: Elisa
authors.initials: E
authors.lastname: Calzolari
authors.forename: Berenice
authors.initials: B
authors.lastname: Doray
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Draper
authors.forename: Stein Emil
authors.initials: SE
authors.lastname: Vollset
authors.forename: Ester
authors.initials: E
authors.lastname: Garne
authors.forename: Miriam
authors.initials: M
authors.lastname: Gatt
authors.forename: Martin
authors.initials: M
authors.lastname: Haeusler
authors.forename: Karin
authors.initials: K
authors.lastname: Kallen
authors.forename: Babak
authors.initials: B
authors.lastname: Khoshnood
authors.forename: Anna
authors.initials: A
authors.lastname: Latos-Bielenska
authors.forename: Maria-Luisa
authors.initials: ML
authors.lastname: Martinez-Frias
authors.forename: Anna
authors.initials: A
authors.lastname: Materna-Kiryluk
authors.forename: Carlos Matias
authors.initials: CM
authors.lastname: Dias
authors.forename: Bob
authors.initials: B
authors.lastname: McDonnell
authors.forename: Carmel
authors.initials: C
authors.lastname: Mullaney
authors.forename: Vera
authors.initials: V
authors.lastname: Nelen
authors.forename: Mary
authors.initials: M
authors.lastname: O'Mahony
authors.forename: Anna
authors.initials: A
authors.lastname: Pierini
authors.forename: Annette
authors.initials: A
authors.lastname: Queisser-Luft
authors.forename: Hanitra
authors.initials: H
authors.lastname: Randrianaivo-Ranjatoélina
authors.forename: Judith
authors.initials: J
authors.lastname: Rankin
authors.forename: Anke
authors.initials: A
authors.lastname: Rissmann
authors.forename: Annukka
authors.initials: A
authors.lastname: Ritvanen
authors.forename: Joaquin
authors.initials: J
authors.lastname: Salvador
authors.forename: Antonin
authors.initials: A
authors.lastname: Sipek
authors.forename: David
authors.initials: D
authors.lastname: Tucker
authors.forename: Christine
authors.initials: C
authors.lastname: Verellen-Dumoulin
authors.forename: Diana
authors.initials: D
authors.lastname: Wellesley
authors.forename: Wladimir
authors.initials: W
authors.lastname: Wertelecki
mesh_terms: D000028:Abortion, Induced / Q000706:statistics & numerical data; D032802:Committee Membership; D000013:Congenital Abnormalities / Q000453:epidemiology*; D016208:Databases, Factual; D005060:Europe / Q000453:epidemiology; D005069:Evaluation Studies as Topic; D005260:Female; D005313:Fetal Death / Q000453:epidemiology; D006801:Humans; D020407:Internet; D011159:Population Surveillance; D011247:Pregnancy; D011296:Prenatal Diagnosis; D015995:Prevalence; D012042:Registries / Q000706:statistics & numerical data*; D050497:Stillbirth / Q000453:epidemiology